Knowledge is Power Even for the Patient with a Rare Disease

Few would argue with the fact that knowledge is power. We live in a society which is overloaded with information. We have information at our fingertips by means of our tablets, phones, devices. There is so much information that it is difficult to take it all in.

When one has been diagnosed with a disease that is so rare that you may be the only person in a large geographical area with the disease, the  need for knowledge takes on even greater urgency and importance. It could even mean the difference between life and death.

When one has a rare disease, your General Practitioner (Family Physician) may find it very difficult to diagnose the etiology (root cause) of your symptoms. Because it is a rare disease, the chances are that he or she is unlikely to have seen your disease before.  This is one of the reasons that patients with rare diseases report difficulties receiving an accurate diagnosis. Naturally, the first port of call for these patients is likely to be the internet.

A search of the internet may provide a lot of information, but how does one know that it is reliable and credible? In this situation, there may even be the temptation to self diagnose and to respond to the websites that offer natural cures for rare diseases.  Unfortunately, there always seems to be someone waiting to draw in the vulnerable patients for the right price.

Knowledge has to be sought, found and sifted through. It must be evaluated critically and objectively for its reliability and its relevance to the situation in hand. In the case of a patient with a rare disease, knowledge would likely involve knowledge about the disease, potential treatments, and possible clinical trials that the patient could enter.

Whatever situation you are facing, remember that knowledge is power even in that situation.

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